Treatment FAQ

what is the recommended treatment for cdh

by Mr. Ronaldo Christiansen Published 3 years ago Updated 2 years ago
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Treatment

  • Delivery. Most fetuses with CDH require some level of prenatal monitoring. Care must be taken when choosing where to...
  • Surgical Repair After Birth. The surgery to repair CDH after birth is usually performed after the baby has stabilized in...
  • Follow-Up Care. We recommend seeing your child's pediatrician within one week of leaving the hospital. Once your child...

In addition to surgical repair, your baby's CDH treatment may include specialized equipment such as the oscillator ventilator, heart lung machine (ECMO) or nitric oxide. Even if they don't need these options, it is important that they have immediate access when necessary.

Full Answer

How do you treat CDH in babies?

About 1 percent of babies with CDH are found during X-rays for other problems. Breathing support is needed before and after surgery. Sometimes, a heart / lung bypass machine is used to help the lungs heal. A baby with CDH needs surgery to put organs into the correct place and close the opening in the diaphragm.

How is congenital diaphragmatic hernia (CDH) treated?

Fetal surgery for congenital diaphragmatic hernia: Fetoscopic endoluminal tracheal occlusion Fetoscopic endoluminal tracheal occlusion (FETO) is a fetal surgery procedure that may improve outcomes in babies with severe cases of CDH. In severe cases, CDH can lead to serious disease and death at birth.

Can FETO be used to treat severe CDH?

Fetal surgery for severe CDH. As part of a clinical research study approved by the U.S. Food and Drug Administration (FDA), The Children’s Hospital of Philadelphia is offering FETO as a treatment option to select fetuses with severe CDH. Learn more about what to expect if you and your baby are a candidate for FETO.

What is the next step after CDH diagnosis?

After a doctor has diagnosed CDH in a pregnancy, the next step is to be referred to a prenatal diagnosis center for additional testing and information. If a patient is referred to our Center for Fetal Diagnosis and Treatment (CFDT), a comprehensive multidisciplinary evaluation will be scheduled.

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Can CDH be corrected?

Once the baby's condition has improved (this may take up to a week or longer), he or she will undergo surgery to move the organs into the abdomen and repair the hole in the diaphragm. If the hole is large it may require an artificial patch.

Can a CDH baby live a normal life?

Lungs in these babies with a mild form of CDH will still be smaller than normal, but they have the chance to grow and adapt for many years. Many of these children can lead normal, active lives without long-term problems.

What is the life expectancy of CDH?

CDH can also affect the right side of the diaphragm and, in rare situations, both sides. Overall survival of CDH babies in the United States is approximately 65 70%. At the University of Michigan, however, survival rate is over 80%.

Is diaphragmatic hernia treatable?

Treatment of Diaphragmatic Hernia Both congenital and acquired diaphragmatic hernias typically require urgent surgery. Surgery must be performed to remove the abdominal organs from the chest and place them back into the abdomen. Consult with your doctor.

What are the chances of having another baby with CDH?

There is a 2 percent chance of having another baby with congenital diaphragmatic hernia (CDH). This means there is a 98 percent chance that the condition would not be seen in a future pregnancy.

How serious is CDH?

Because CDH forces the lungs to grow in a compressed state, several aspects of their function may not develop normally until after the birth of the baby. A baby with CDH may suffer from a form of underdeveloped lungs known as pulmonary hypoplasia.

What are the long term effects of CDH?

After discharge from hospital, CDH survivors may have long-term sequelae such as respiratory insufficiency, gastroesophageal reflux, failure to thrive, neurodevelopmental delay, behavior problems, hearing loss, hernia recurrence, and orthopedic deformities.

What is a CDH survivor?

Chase had congenital diaphragmatic hernia, or CDH, a defect in which the diaphragm doesn't form fully during development. Abdominal organs float up into the chest cavity, and babies like Chase are born with tiny, stunted lungs that can't supply them enough oxygen to survive.

What is the survival rate for diaphragmatic hernia?

Congenital diaphragmatic hernia (CDH) occurs in approximately 1:2000 to 1:5000 live births. [1, 2] Despite advances in medical and surgical treatment, overall survival has remained at approximately 70% over the past 2 decades.

Can a diaphragm be repaired?

The Diaphragm Repair Procedure This procedure may be done as open surgery, but is most often performed laparoscopically. The latter requires only small incisions and results in less pain, less scarring, and a shorter recovery time. Sometimes the surgical repair is performed by suturing the patient's own tissue only.

How long can you wait to have hernia surgery?

Many people are able to delay surgery for months or even years. And some people may never need surgery for a small hernia. If the hernia is small and you don't have any symptoms, or if the symptoms don't bother you much, you and your doctor may simply continue to watch for symptoms to occur.

What causes high blood pressure in the lungs?

This causes high blood pressure in the lungs ( pulmonary hypertension ). CDH is one of the most common major congenital anomalies, occurring in 1 of every 2,500 – 3,000 live births.

What side of the diaphragm does CDH occur on?

Approximately 83% of babies with CDH have a defect on the left side of the diaphragm. A left-sided CDH allows for the possibility of the stomach, intestines, and sometimes the liver to move (herniate) up into the baby’s chest.

What is a congenital diaphragmatic hernia?

What is congenital diaphragmatic hernia (CDH) With CDH, a hole in the diaphragm allows abdominal organs to move into the chest during fetal development. There, they can crowd the heart and lungs and keep the lungs from growing normally. © CHOP/CFDT Congenital diaphragmatic hernia (CDH) occurs when the diaphragm, ...

How to tell if a baby has CDH?

Signs and symptoms of CDH. CDH is typically discovered during a routine prenatal ultrasound. The sonographer may notice stomach, intestine, or liver in your baby’s chest where the lungs should be. The baby’s heart may also be pushed to one side by the extra organs in the chest.

What is ECMO in babies?

If the baby is unstable, they may move onto extracorporeal membrane oxygenation (ECMO). ECMO allows the lungs to rest while a machine takes over the function of the heart and the lungs, delivering oxygen to the baby while removing carbon dioxide, the waste product of breathing.

What is the goal of a newborn in the N/IICU?

Your baby will be settled into the N/IICU where the initial goal is to keep the baby as stable as possible. Lights will be kept low; noise and handling will be minimized to optimize functioning of the baby’s small lungs which are highly reactive to stimulation because of the associated pulmonary hypertension.

How long does it take to deliver a baby with CDH?

You can expect delivery around 38-39 weeks for your baby with CDH.

What is a CDH baby?

Congenital diaphragmatic hernia and pulmonary hypoplasia. A baby with CDH may suffer from a form of underdeveloped lungs known as pulmonary hypoplasia. When pulmonary hypoplasia occurs, there are abnormalities that impact: The number of air sacs ( alveoli) available for air entry into the lungs. The distance that oxygen has to travel to reach ...

Why does CDH increase during pregnancy?

Because fetal activity and breathing movements become more frequent and vigorous as a pregnancy continues, the amount of herniation can fluctuate or increase. Sometimes CDH is caused by a problem with a baby’s chromosomes or by a genetic disorder.

How to detect CDH in a fetus?

To confirm a prenatal diagnosis of CDH, doctors may perform a very detailed ultrasound, conduct testing of the fetus’s chromosomes and take measurements of its lung size.

How long does it take for a fetal lung to expand?

If this outflow of fluid is blocked, it has nowhere to go and swells up in the affected lung. When this occurs over a period of four to five weeks, the lung expands and its function appears to improve.

Why do we need fetal therapy?

The goal of fetal treatment is to reverse some of the lung damage that results from compression of the lungs.

What is isolated CDH?

This is called isolated CDH, and under these circumstances the primary concern is the degree of pulmonary hypoplasia caused by the defect. In order to determine if CDH is isolated and to provide the most correct information about the disease, genetic testing is required.

What is a congenital diaphragmatic hernia?

What is congenital diaphragmatic hernia? Congenital diaphragmatic hernia (CDH) occurs when there is a hole in the diaphragm, which is the thin sheet of muscle separating the chest from the abdomen. When this gap forms during a fetus’s development in the womb, the bowel, stomach or even the liver can move into the chest cavity.

Incidence of CDH

Early in the pregnancy, many organs are forming at the same time. The tissue from the lungs and stomach area does not form correctly, leaving a hole in the diaphragm. Many factors might play a part, such as multiple genes and environment but there really are no known causes.

Congenital Diaphragmatic Hernia Treatment

Breathing support is needed before and after surgery. Sometimes, a heart / lung bypass machine is used to help the lungs heal. A baby with CDH needs surgery to put organs into the correct place and close the opening in the diaphragm.

Congenital Diaphragmatic Hernia Prognosis

Babies born with CDH need regular follow-up with specialists after leaving the hospital.

How Common Is It?

CDH is seen in approximately one in 2,500 births and usually can be detected during pregnancy. It can occur on either side of the chest cavity but is most common on the left.

How Is It Diagnosed?

Often, the presence of CDH is discovered through routine ultrasound between 15 and 20 weeks of gestation. A level II ultrasound is performed to confirm the CDH diagnosis and measure its severity, by assessing the size of the lungs and identifying the position of the liver—if the liver has moved into the chest, the condition is more severe.

What Can Happen Before Birth?

The biggest danger of CDH is that the lungs may be so underdeveloped that the baby is not able to breathe after birth.

What Can Be Done Before Birth?

Most babies with CDH are best treated after birth; however, fetal intervention is possible for the most severe cases.

Treating Congenital Diaphragmatic Hernia with Fetal Surgery

Francois Luks, MD and Stephen Carr, MD explain how fetal surgery can be used to treat CDH.

What Are My Delivery Options?

Unless there are signs that the fetus is in trouble, pre-term delivery or Cesarean section is not necessary. Cesarean section may be necessary for obstetrical reasons, however.

What Will Happen At Birth?

Babies with CDH often require the help of a respirator to breathe after birth. Serious cases may need to be treated with extracorporeal membrane oxygenation (ECMO), a lung bypass machine that allows gas exchange (taking in oxygen and giving off carbon dioxide) while the baby’s lungs are resting.

What is Congenital Diaphragmatic Hernia?

Congenital Diaphragmatic Hernia (di-a-frag-mat-ic), or CDH, is a rare congenital (occurs before birth) condition.

What Causes Congenital Diaphragmatic Hernia?

No one knows the exact cause of congenital diaphragmatic hernia. Studies show that 1 in every 2,500-5,000 babies are born with this problem. It is congenital, meaning that it happens before your baby is born. The survival rate is approximately 75%. Survival is usually better when the liver stays in the abdomen.

How is Congenital Diaphragmatic Hernia Diagnosed?

Congenital diaphragmatic hernia may be found during routine prenatal ultrasound. Sometimes is it found after the baby is born. If the condition is suspected, your physician may refer you to a fetal center for a comprehensive evaluation and or order additional testing, including:

What are the Symptoms of Congenital Diaphragmatic Hernia?

CDH may not be diagnosed before your child is born. Signs of CDH after birth can include:

Care During Your Pregnancy

If a test finds you are carrying a baby with congenital diaphragmatic hernia, you will keep getting care from your obstetrician (OB/GYN). Your OB/GYN may also refer you to The Fetal Center at Nationwide Children’s.

How is Congenital Diaphragmatic Hernia Treated?

While all babies with CDH will need surgery, surgery is not done right away. It is very important to make sure the baby’s breathing is stable and manage the high blood pressure in the lungs before going to surgery. Surgery may be done as early as 2 to 3 days after birth, or as late at 4 to 6 weeks after birth.

Questions? Give us a call

Our team is here to answer questions and discuss concerns you have about your baby.

Request an appointment

Submit a request for an appointment and our team will reach out to you to discuss options.

Traveling for care?

We treat children from across the country, and the world, in the CDH Center at Johns Hopkins All Children’s in St. Petersburg, Florida. We have several resources to assist you and your family as you travel for care, including information about requesting a room at one of several Ronald McDonald Houses on our campus.

Prepare for your stay by reading our Inpatient Family Guide

It’s a little easier when you know what to expect and understand what’s going on around you. We hope this guide will be a handy source of information about how our Hospital works. If you have questions or need assistance, don't be afraid to ask. We are here to help.

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